I'm at the end of my tether

[Weenumpty]

Hi, never posted before but as the title says, I'm at the end of my tether. I have been feeling unwell for weeks and just feel like I'm getting nowhere. My symptoms
-extreme fatigue
-dizziness
-nausea
-shaking
-occasional night sweats
-pins and needles
-random burning toe pain in the night

I am not managing to work and even a trip to the shop on a good day causes me to come home and get into bed.

I am taking vitamin D and this is due to be tested again in April but I haven't felt any improvement. I have asked to be tested for b12 but this is not until 4th April which to me, at the moment, feels like ages away.

I had some tests done at endocrinology last week and my dr said my morning cortisol was 360. I just phoned endocrinology to ask if there will be any follow up (not normally pushy like that but I feel awful) and the nurse said the dr will write to me but they are happy with my results. I am actually gutted which sounds ridiculous, because I want to have some hope that they have found and can treat what's causing this. I have also read that if morning cortisol is between 100-400 they should do a short syncathen test.

Does anybody know if I'm right about cortisol levels? Could easily be wrong as I just googled it! And anybody got any ideas about what else could be going on?

Thanks

Hi, i have similar symptoms, i have been ill for years, and been diagnosed as fibromyalgia. I have treated vitamin b12 and D deficiency. I did pay for a private 9am cortisol once as this seems to be the only test the GP has never ordered, my result was 243, as i understand it, in normal range but at the lower end. I am afraid that i dont know about the recommendations for referrering for a short synacthen test, i never brought it up with my doctor, not sure if i should, my night sweats are getting worse tho at the moment.

Hope someone with more knowledge comes along

I keep getting these symptoms as well for a few years. Not been to the doctors as I'm so busy being a single mother. From these posts it sounds like i should go. Eeep.

I had been feeling generally tired for a while and had dizziness but it became worse slowly until now it is relentless. I am low on ferritin too so I'm hoping that it's just a mixture of that and possibly b12 and I'll feel fine again.

How low is your iron level? These can very much be the symptoms of anaemia, so low iron levels alone could explain how you feel. Are you taking ferrous sulphate tablets?

I totally recommend the B12 H&B - might be worth starting these anyway?
I'm on week 3 and have noticed a difference

How old are you op? I’m feeling almost exactly the same as you. So far I’ve had my iron levels checked (have been quite low but were creeping up on last check), vitamin d (46 not sure if that’s low but GP said to take otc vit d), I asked for thyroid function last week but they say all ok. Feel I’m going back and forward to GP, they don’t offer any help but I’m feeling exhausted, weak and shaky all the time and feel I need to be more pushy as I’m getting nowhere. You have my sympathy op.

Just wondering if you'd had your blood sugar levels checked. These symptoms sound like type 2 diabetes to me. Very similar to the symptoms I had and ignored as I thought I was menopausal. Turns out to be high blood sugar and diabetes.

I was just about to say that sounds like low iron to me. Are you trying to remedy that?

Hi, my ferritin was 10 last time it was checked, my haemoglobin is fine, not sure what level, I have tried all the different forms of ferritin supplements including with laxatives and with anti sickness but just can't tolerate them, so the endocrinologist suggested to my gp that I get an infusion. I am going for an iron injection on Wednesday so really hoping that gives me a boost. My gp said he could only get consultant to agree to an injection and he doesn't think it will alleviate my symptoms. I was a bit shocked at that as I felt like he was making out that I had asked for an infusion which I never did, and that I was almost being silly thinking that it would help- he doesn't think you should get symptoms from just low ferritin.

They were testing sugar levels at endocrinology so waiting to see the results of that, it's something I had thought about too, especially as I am at my shakiest first thing in the morning. I'm struggling with my appetite at the moment too, it's just non existent and I can't afford to lose any weight. I am using complan to try to build up a bit.

Twoweekcruise I am 33, feel like 93!

I have IBS so have terrible trouble tolerating iron supplements because of this it's been a very slow process building my levels up with Spatone (the only thing I can tolerate). I'm waiting for infusions but nothing seems to be getting done!

The anaemia boards on Facebook would vehemently disagree with your gp! Ferritin should be at 75 or so as an optimal level. Mine is 5, up a point on 2 years ago, woohoo! Sometimes it feels like a constant battle. I too don’t tolerate ferrous sulphate or fumarate but I’m doing and feelin really well on Biotic Research 25mg ferrous glycinate with additional methylfolate. Hope that helps

This is what frustrates me! The gp won't acknowledge that my symptoms could be down to the low ferritin as my haemoglobin is fine! And the way it was put to me was "the consultant has agreed to give you a one off iron injection but he doesn't think it will alleviate your symptoms" I feel like I will be treated like a pest when I get it tomorrow. And I am worried that one injection will only help temporarily as I have such heavy periods. Sorry, im ranting now but just so fed up feeling awful!

OH rant away, I totally feel your pain. My gp has refused to do anything to help my heavy periods for years, other than tranexamic acid which I can’t tolerate, it took a high ovarian cancer marker plus an abnormal ultrasound (thick endometrial lining and polyp) to finally get a referral to gynae
Hope the iron helps, be prepared for side effects as I’ve read some people do suffer quite badly. I’d love to know how you go as I really should have one but I’m a bit too scared

Hi, so an update- feel like I'm getting somewhere!

I had the iron yesterday, it was an infusion not an injection and the consultant was lovely he said if it helps and later on I feel like I need another to ask my gp and I can go back, so feeling really positive about that (will be changing gp as there was no need to make out that consultant wasn't happy when clearly he was fine)

The IV iron was absolutely fine, I did have the worst headache ever last night and head is a bit sore today and feel a bit achy in general but that's quite normal and no worse than I've been feeling anyway!

Endocrinology called me this morning to say that I need to go in on Tuesday for the short synacthen test so I'm feeling ok about that, maybe I'll finally get some answers!

Hope you're feeling ok and keep pushing!

Hi @Weenumpty I know this is an old thread, but did you get anywhere regarding your cortisol results? My morning cortisol came back at 305 (similar symptoms to you) but GP has marked my result as 'no further action'. There was no normal range given, but from what I've read it should be 400+. I'm also on HRT which I know can make results look falsely elevated, so true results likely to be lower if anything... Thank you!

Hi, I’ve changed my username but it’s weenumpty here!
I’m so sorry you’re going through this, just reading my posts reminded me how awful I felt at that time. I’m so glad I felt well enough to not remember.
I didn’t get any further action after the synacthen test but that was because the iron infusion worked wonders for me. I’ve had 2 more since and haven’t needed because I went on birth control to stop my heavy periods so despite the dr refusing to believe it was all caused by low iron that is indeed what it was.
I’m so sorry I can’t be of more help, just keep pushing if you can, I know it’s so hard when you feel awful. Hope you get the help you need.

Hey @Fleabag84 / @Weenumpty Thanks ever so much for your reply, and I'm glad to hear you're feeling better. From what I gather my cortisol result wasn't that low, so looks like I'm also looking elsewhere for answers!